Looking for love in between hospital stays.

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About Me

I’m in my early 40s and have never been married or had children. I have had one night stands, short term relationships and long term relationships, all of which have been flavored by technology. Oh, yeah, and I have some crazy chronic diseases that can be really challenging and not very sexy.

Up to this point I have lived a very fulfilling and sometimes wild life. When I was 16, I left home to live on the campus of a public school for the arts, where students aged 16-18 finished out their junior and senior years surrounded by six different art disciplines including dance, theater, music, visual, literary and media, and none of the school’s funding was funneled away to sports. We had to pass requirements including auditions and tests in order to attend. This was the first place in my life up to this point where I felt like I could throw myself into adventures head first and feel truly confident in my choices.

From 18-21, I spent three spring-fall seasons on Mackinac Island in Michigan to earn money and gain experience. For those of you not familiar with the island, there aren’t any motorized vehicles allowed of any variety save the lone ambulance and police car. The main mode of transportation is bicycle and there are hundreds of working horses who are also responsible for hauling people and goods around. I met a lot of European workers who are sponsored every year by business owners on the island who like to have people with British accents acting as sales clerks for their stores.

When I was 21, a good friend and I took some time to travel and camp around the U.S. I knew I was going to pick a new place to live, but I wasn’t sure where. I seriously considered Hilton Head Island and Nashville, but when I ran out of money in Albuquerque, that’s where I landed.

Albuquerque is where my dating really started coming alive. I was a mid-Westerner transplanted in a city with a demographic very much different from what I grew up with – suddenly, I was exotic! Eventually I started dating a man who I moved in with and then quickly relocated to Cincinnati with under somewhat questionable circumstances. After a few years, he and I parted ways, and it wasn’t long before I seriously dated another man and we moved in together. Things did not go well with that one – eventually I’ll refer to him as Drummer #1, just keep your eyes peeled – and I decided that it was time to move back to the southwest.

I had many, many dating adventures for 11.5 years while living in Phoenix. Luckily the internet has provided me an endless pool of candidates to choose from.

So that’s the dating portion in a nutshell. But just like John Irving’s books where one isn’t just a doctor, but a doctor with an addiction to ether, my dating is tempered by physical illnesses and limitations.

When I was a small child, approximately 3 years of age, I started experiencing bouts of alopecia areata. My hair would fall out in completely round, bare patches without explanation. Up to the age of 23 I would lose up to six spots randomly around my head about the size of a quarter each, and I would just have to be careful about wearing pony tails or pulling my hair back. The great irony is that my father (who passed away from a heart attack when I was 22) was a hair stylist, and these patches would send him into fits. He would always ask me what I was doing to myself to make these patches of hair fall out – which was nothing, because it’s my immune system attacking my hair follicles thinking that the hair is a foreign invader and making the follicles dormant. At 23, I suddenly lost about 50% of my hair, with great, big patches as large as decks of playing cards falling out within days. I went to a dermatologist every three weeks to get steroids injected in my scalp to try to get the immune system to back off – 75 shots, one shot at a time. If you ask me I can tell you where it’s relatively okay to get shots and where you will want to punch your doctor in the throat if he pokes those spots that are especially tender. It’s recommended that you only do that for about 6 months, but I did it for four years and got additional shots of steroids in my behind to try to keep my hair. Then one weekend, when I was about 27, my hair started falling out even faster so that clumps were left on my pillow. I started wearing wigs that weekend and eventually shaved off the few clumps of hair that clung to my head. You know that baby with the sprouts of hair in the Grinch? That was me, just a few antennae sticking up until I buzzed them off. I have been completely bald without an active hair follicle in sight on my head or my body (except, wait for it….my big toes!!! Why couldn’t I have kept my eye lashes?) since the fall of 2002. Once you develop alopecia universalis, there is no hope of going back. So I’m bald.

In 2005, I was diagnosed with Hashimoto’s Thyroiditis, another autoimmune disease in addition to the alopecia. My body has developed antibodies that attack the thyroid because, again, it thinks it’s a foreign invader. I have been on varying doses of thyroid medications including Armour, which is made of ground up pig thyroids, as well as Cytomel, a synthetic T3, and Synthroid, a synthetic T4. The biggest problem I have with this condition is that it makes it really, really hard for me to lose weight, and adds to my fatigue.

Since around age 23-24 I have had the diagnosis of fibromyalgia. This is a disease that is still being researched and it seems to follow autoimmune conditions closely. It is possible to have, say, lupus as well as fibromyalgia, but it’s sometimes hard to differentiate between the diseases because their symptoms overlap. Sometimes you’re bone-crushingly tired but you can’t say if it’s the Hashimoto’s or the fibromyalgia giving you trouble. There is a lot of documentation out there now, so if you’ve never heard of it, or if you have but haven’t paid attention, shame on you. Besides making me tired and feeling like I have perma-flu, there’s other challenges like not wanting to scratch an itch at the inside of my knee – usually it feels like a hot poker if I touch a certain area. My hips and lower back are also very tender, so when the doctor presses them and says, “Does this hurt?”, I flail and jump in a very unfunny way. Fibromyalgia is also the reason for the last 20 years that I have hired moving men every time I have relocated. If I don’t, I will end up in bed for a week or more.

Most recently and completely debilitating is something I developed in the fall of 2009. I had a constant rocking sensation, and also ended up in the ER with an excruciatingly painful and stiff neck with no explanation. In July 2010 I suddenly came down with crushing fatigue and vertigo, and my vision became blurred. After a week my head started nodding uncontrollably, my feet turned inward when I walked, my blood pressure skyrocketed, my cortisol levels showed as being 10 times the norm, and my forehead and left eye became paralyzed. I have been tested for everything under the sun, or so it feels. We ruled out MS, RA, Lupus, secondary tremors, Creutzfeldt-Jakob disease, Chiari malformation, myasthenia gravis, or scleroderma. The world-famous Mayo Clinic in both Rochester, MN and Phoenix permanently banned me because they didn’t understand my symptoms. Quoting from their letter to me: “[W]e are unlikely to make a definitive diagnosis or come up with a definitive treatment for [the patient’s] unusual symptom complex.”

In July 2011, I had a shunt placed surgically that continuously removes fluid from my brain so it doesn’t build up and press on my nerves and cerebellum or I lose most of my vision and ability to walk. Making matters more complicated is that I appear to be having an allergic or autoimmune reaction to the shunts that have been implanted to drain the fluid. My body builds up an obnoxious amount of scar tissue around the shunt and eventually clogs it, so that I have had to have multiple surgeries to replace the shunts. To date I have had 10 surgeries in 46 months, with the most recent one failing two weeks after surgery on May 11, 2015. I am violently allergic to nickel, which is used in shunts that have metal in them, so I now have an all-silicone shunt. My left eye is now developing a cataract as well.

I was laid off from a job in February of 2015 that allowed me to remain employed much longer than I could have ever hoped for because I was able to work from bed and prop the work laptop on my stomach to get my work done. My family convinced me to move back to Minnesota so they can help care for me. I had to sell my house, say goodbye to good friends, kiss warmth and sunshine goodbye, and become established with a new team of doctors in the Minneapolis/St. Paul area. To date, I have seen 65 doctors and nearly all of them have told me to go away and not to come back – and that is in 8 different disciplines. I have actually received worse care in Minnesota than in Arizona.

I made an appointment with a naturopath to try to deal with my fibromyalgia issues that seemed to be amplified because of the time I have had to spend in bed. She encouraged me to get a Lyme test; I thought that it was another waste of time and money, because I had previously been living in the southwest, not an area known to have a lot of Lyme cases (only 53 reported to the CDC from Arizona, to be exact). My tests came back positive.

The traditional western doctors who have continued to see me at this point – admittedly only 3 who have not told me to go away and don’t come back – don’t think I have Lyme, but aren’t sure what I have, and so I still get the diagnosis of “rare disease.”

One positive step in Minnesota was that I was lucky enough to get an appointment with Dr. Afrin at the University of Minnesota, which led to a diagnosis of mast cell activation syndrome. The disease has only been named for about the last nine years, but I have had symptoms since birth. Most of us with this disease struggle with systemic hives, anaphylaxis and GI problems; right now the list of foods that don’t give me hives are white/brown rice, chicken, beef, broccoli, asparagus, coconut, carrots and salt. Everything not included on this list (and that goes for spices as well) can cause a histamine reaction in me, which could mean that I get hives all over, or my GI tract hates me immediately, or I actually lose the entire lining of my mouth and I develop these painful sores. I’m also allergic to parabens so I have to be careful that the lotions and shower gels I use don’t contain those, and sometimes they are hidden in prescription and OTC medications. (I’m not going to go into the list of all the medications that I’m allergic to, but I carry an alphabetized list.) Unfortunately, Dr. Afrin abruptly left Minnesota in July of 2017, so I’m no longer under his direct care. This is incredibly difficult for me because I’ve had such a hard time finding ANY doctors who will take me on as a patient – he (calmly) told me that he would never turn me away, and that he believed me. His departure left a lot of patients without a doctor to care for them. Luckily I landed with a doc who was familiar with the disease and willing to continue my care, and he has been a superstar.

I think I may have found the source of my difficulties with my CSF not draining properly, and I was only able to put everything together because of what my neurosurgeon in Phoenix encountered with the dura surrounding my brain and reported back to me, as well as based upon a conversation I had with a researcher about the lymph drainage system that was definitively documented in July of 2015, and lastly what Dr. Afrin and I discussed about my enormously high histamine levels and the proliferation of scar tissue. Here is a better explanation. It took me seven years and I figured it out, not the doctors!

This fall I was finally diagnosed with POTS (a heart/blood pressure condition that is made worse with being upright and standing that occasionally causes fainting) and hidradenitis suppurativa, another autoimmune condition that causes horrible, painful skin infections, and the only way that I can treat it is injections that I’m allergic to because I’m much more allergic to the antibiotics that can also be used to treat it. I have actually known that I had POTS and HS for years, but doctors have been telling me it’s my imagination or I must be doing something wrong – because, you know, medical sexism. I finally was also diagnosed with hypermobility in my joints, also known as Ehlers-Danlos Syndrome or EDS. EDS, POTS and MCAS all come from the same genetic anomaly.

My case for disability was denied for 3 years even though I had to remain in bed for 20-22 hours every day to keep the pressure off of my brain when I’m upright because no doctors would actually step up and advocate for me, and the government won’t recognize disability if there’s no diagnosis and therefore no prognosis of length of disability or possibility of recovery. I finally got a favorable decision at the end of March 2018 after depleting all of my own financial resources completely – literally down to my last dollar. Three doctors wrote letters on my behalf and I went through a physical performance test to document my declining health, which I highly recommend for anyone with a rare or invisible illness going through the process.

By the way, if at any time you are tempted to tell me, “Why don’t you just ________?” in regards to dealing with my health, DON’T. I am the expert on my body. I am the one who has done all of the research up to this point and have used all of my five minutes with each doctor to present my strongest arguments and beg them to help me. Believe me when I say that I have considered every option. Believe me when I say that I have already thought of whatever is crossing your mind and it doesn’t apply to me.

So sit back and enjoy my tales of woe in the dating world spiced up by my bald head and partially paralyzed face.

30 thoughts on “About Me”

I love your final paragraph, it matches totally with my feelings. Why do people think we are that thick, that after years of illness, we haven’t thought of their oh so simple idea, ill-researched so called fact, or are interested in their clearly quackery cure? Chronic illness made us ill not thick!

Thank you for coming by and following my blog.
I have vertigo…for a number of reasons, dome they don’t know. I’m going to John Hopkins next week to see if they may have any new insights.

I also have high CFS. Not so high I have to have a shunt, but they have talked about it at one point. Dr. Linda Gray at Duke is amazing. That’s pretty much what she does. Works with CSF stuff. I’m lucky I can be regulated with medication most of the time now, but sometimes my pressure will spike and I’ll have a “blow out”. I develop a leak suddenly, and my pressure will suddenly drop too low, that messes everything up.

Good luck my dear.
I look forward to getting to know you better.
Wendy
Picnic with Ants

Thank you, Wendy, and good luck on your visit! I have always had normal pressure but we found that when we did a couple of back-to-back LPs that my symptoms resolved, and that’s the only reason we went with the shunt option. Diamox doesn’t have any affect on my symptoms at all, unfortunately. I’m going to file your doctor’s name away in my memory for future reference. 🙂

I also had normal readings, but Dr. Gray believes in empirical evidence. When I was having my LP, she took more fluid out and I felt better, she added more in and I felt worse. Made sense. Just as your back to back LP’s made sense. I hate the thought that you still can’t sit up for long even with a shunt. That’s just crazy. I hate you are going though all of this. My thoughts are with you. May you get some answers and some resolution. Peace to you.

On a similar note, “just” and “only” have always been two words that make me go bananas inside the moment I hear them in a sentence, regardless of what follows — as in, “but it’s JUST .. [a matter of something that I’m sure you’ve never thought of in all the years you’ve been dealing with your problems, but *I* – brand new to them – can see & solve immediately”] — and “it’s ONLY [a matter of something SO simple that you surely must be an utter imbecile not to have thought of it yourself!!).

Neuro (and physio) typicals! GRRRR, I’m never sure whether to pray for the continuation of their blissful ignorance to keep my own karma clean, or to stick pins in some sort of doll that will result in their falling off their “I know and you don’t” perches to walk a few miles down here in the trenches.

You have led both an interesting and a very challenging life. I admire your resilience. I’ve had chronic lyme since the ’80’s and I agree with you, you do get to know your body well from all perspectives (good and bad.). Thanks for reblogging my post. I’m quite serious about women and the men who love and respect them, supporting any move toward gender equality. Although I never intended for my blog to deal with some of the topics I’ve been writing about lately, it has been a healthy and cathartic experience. I wish you a peaceful week. Clare

Thank you, Clare. I appreciate your kind words. I am glad that blogging has helped you line up your thoughts and put them out there for us to read them, because I definitely relate to what you talk about. Cheers and best wishes!

So you thought it was best to ignore the part where I specifically said, “By the way, if at any time you are tempted to tell me, “Why don’t you just ________?” in regards to dealing with my health, DON’T.”? What makes you think I didn’t already see an Ayurvedic practitioner – just because I didn’t talk about it here at length? It’s so disrespectful to think that you know best. You haven’t been at my side these past 8 years.